Autism, Interventions and Parent Training

Booth, N., Gallagher, S., & Mickey, K. (2018). Autism, Interventions and Parent Training. Psichologija, 57, 74-94.https://doi.org/10.15388/Psichol.2018.0.11904

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DOI: https://doi.org/10.15388/Psichol.2018.0.11904 ISSN 1392-0359. PSICHOLOGIJA. 2018 57

Psicholo gija praktik ai

AUTISM, INTERVENTIONS AND PARENT TRAININGNichola BoothBehaviour Analyst, PhD in Behaviour AnalysisParents Education as Autism TherapistsBelfastN. IrelandE-mail: nichola@peatni.org

Mickey KeenanProfessor, PhD in Behaviour AnalysisSchool of PsychologyUlster UniversityN. IrelandE-mail: m.keenan@ulster.ac.uk

Worldwide, the prevalence rates of autism are increasing. This review looks at the additional stressors that parenting a child with autism can bring, including psychological distress and mental health difficulties. With the difficulties associated with the autism diagnosis and additional demands on the parents, research has shown that parent training, which helps teach parents new skills, may be advantageous. This review also looks at the most commonly used interventions that parents might avail of in order to acquire new skills, and it examines whether they are based in science, pseudoscience or anti-science. Utilizing best prac-tice from evidence-based research, parents can be successfully trained to teach new skills across a variety of different domains. The advantages and disadvantages of one-on-one training sessions versus group training events, as well as the different components that contribute to each, are discussed. A number of training packages are discussed, including Behavioral Skills Training, video modelling and manualized training packages. We conclude that there is substantial evidence showing that packages with behavioral underpinnings are more effective for children with autism. Autism awareness and education is simply not enough – educate the parents using evidence-based practice to help effectively educate the children.

Keywords: autism, ABA, parent training, evidence-based practice.

Autism Spectrum Disorder (ASD) is a developmental disability that is purported to affect approximately 1 in 160 children worldwide (WHO, 2017). This high preva-lence rate has resulted in the Centers for Disease Control and Prevention considering autism as “a public health concern” with 1 in 67 children in the United States being

diagnosed (CDCP, 2016). To receive a diagnosis of ASD, individuals will present with difficulties in social interaction and communication as well as a narrow range of interests and activities that are unique to the individual; many of these activities are carried out repetitively (NHS, 2016). As autism is a spectrum disorder, the difficul-

Stephen GallagherLecturer, PhD in Behaviour AnalysisSchool of PsychologyUlster UniversityN. IrelandE-mail: sm.gallagher@ulster.ac.uk

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& Schweitzer, 1990; Donenberg & Baker, 1993). Invariably, higher levels of stress appear in those families where there was a child with a confirmed diagnosis of autism. The demands that come with parenthood, particularly when parenting a child with a disability, are further exacerbated whenever there is a lack of extended family support networks (Lawton & Sanders, 1994). The substantial consequences of emotional and behavioral difficulties in a child with a developmental disability were a key indicator as to whether parents will seek a residential placement for their child away from the family home (McIntyre, Blacher, & Baker, 2002). However, it has been also noted that more children with an intellectual disability are being raised independently in the family setting and extended community (Taube-Schiff & Serbin, 2006).

The perceived level of social support and general coping styles of parents have also been associated with higher stress levels. Families with more available sup-port tend to report less stress (Factor, Perry, & Freeman, 1990) and those with more productive coping strategies also report less stress (Benson, 2010). Traditional coping strategies have often been escape/avoidance tactics, resulting in higher stress levels, whereas those that are more problem-focused in nature have lower stress level outputs (Hastings & Johnson, 2001). Parents of children who are diag-nosed with autism have already higher stress levels (as referenced above), and these traditional coping strategies may be ineffective. Subsequently, four other coping strategies were identified – distraction cop-ing, disengagement coping, engagement coping and cognitive reframing coping

ties presented by one individual may be completely different from those presented by another individual on the spectrum. Other difficulties that are associated with an autism diagnosis, outside of the key difficulties referenced above, include but are not limited to challenging behavior, cognitive difficulties, learning difficulties and co-morbid conditions, such as attention deficit hyperactivity disorder (ADHD) and epilepsy. An individual with a diagnosis of autism may be able to successfully complete their education, access employment and have relationships with friends and signifi-cant others; however, another individual on the autism spectrum may require 24-hour support for the rest of his/her lifespan. This is the main reason why a “one size fits all” approach for intervention would not be warranted.

Although some stress is considered normal when parenting a child (Deater-Deckard & Scarr, 1996) research has dem-onstrated that those parenting a child with autism are more likely to experience sig-nificantly higher levels of parenting stress and psychological distress (Abbeduto et al., 2004; Baker-Ericzen, Brookman-Frazee, & Stahmer, 2005); 84% of mothers of children with a developmental disability reported higher levels of stress scores falling within the clinical range (Oelofsen & Richardson, 2006). Studies have compared stressors that the parents of a child diagnosed with autism may experience with the stress-ors associated with typically developing children (Brobst, Clopton, & Hendrick, 2009) and those diagnosed with Down’s syndrome, intellectual disability, cerebral palsy or cystic fibrosis (Abbeduto et al., 2004; Blacher & McIntyre, 2006; Bouma

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(Benson, 2010). Distraction coping and dis-engagement coping best fit into the model of escape/avoidance coping mechanisms, e.g., modulating emotions or substance abuse. The other two, engagement coping and cognitive reframing coping, are more applicable to problem-focused theory, e.g., active involvement in addressing the stress-or and ‘coming to terms’ with the autism diagnosis positively. Whilst this research is limited, it has been concluded that escape/avoidance, distraction/disengagement strategies had a greater negative impact on parental well-being (Benson, 2014; Hastings et al., 2005). In order to help with coping, the level of social support must also be addressed. Social support can be clas-sified as both formal and informal. Formal social support is that which is provided by a relevant health professional and, whilst it has its merits, some research has concluded that informal social support is actually more important for those parents insofar as it is ‘a more effective stress buster than formal support’ (Boyd, 2002). However, social support was not found to have any impact on the well-being of a cohort of parents in Lebanon (Obeid & Daou, 2015). What is apparent is that parents tend to fall into two categories. Some are reactive, that is, they address the ‘problem’, source information and implement recommendations to help their child. Then there are others – those who effectively ‘bury their heads in the sand’ and view the diagnosis as something that is ‘fixed’ and therefore unchangeable.

Autism is considered a spectrum dis-order; therefore, there are differences in how the disorder is presented as well as differences in severity levels. Those with an autism diagnosis ‘may be severely im-

paired or may face only mild challenges’ (Hoogenhout & Malcolm-Smith, 2016), but the severity level of the diagnosis has been suggested as a contributing factor for parental stress and depression (Eisen-hower, Baker, & Blacher, 2005; Hastings & Johnson, 2001). Child characteristics (age, autism, severity, child quality of life and problem behavior) were studied to exam-ine their impact on parenting stress levels (McStay et al., 2013). Whilst the child’s age did not suggest higher stress levels in the parents, there was partial support for higher stress levels for those parents who reported a poorer quality of life for their child as well as a more severe diagnosis and more oc-currences of problem behavior. This would suggest that parents “may not perceive these factors to be due to their individual parent-ing styles or parenting skills” – ultimately, not within their control.

The age of a child has also been identified as a possible contributing factor to stress levels for parents (Gray, 2002). However, research findings have been inconsistent. Changes in maternal stress levels were examined in mothers of children of vary-ing ages with a developmental disorder (Orr, Cameron, & Dobson, 1993). Findings suggested that parents of children between 6–12 years old reported significantly higher levels of stress than parents of 2–5 years old and 13–18 years old. Other studies, how-ever, found that parent stress was signifi-cantly higher in parents of children within the younger age bracket. A meta-analysis of cross-sectional research identified that rates of depression and anxiety were higher in parents of younger children with a de-velopmental disorder compared with those of older children (Singer, 2006). Based

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on this finding, it was hypothesized that older parents adjusted to parenting demands throughout their child’s lifespan. However, a strong positive correlation between stress and parenting young adults (15–18 years old) suggested that parents may find it hard to manage a child approaching adulthood (Teehee, Honan, & Hevey, 2008).

To help reduce these reported stress lev-els, it has been suggested that there may be some advantage in educating these parents to have new skills for addressing the difficult behaviors they often have to manage. For example, Smith, Buch and Gamby (2000) found a decrease in parental stress follow-ing parent training, and they also found an increase in parental optimism and parental access to leisure time (Koegel, Schreibman, Britten, Burke, & O’Neill, 1982). Indeed, it has been observed that children with an ASD diagnosis benefit from targeted parent education to help achieve their full potential (National Research Council, 2001; see also Schopler & Reichler, 1971; Neef, 1995; Carr, 1999; Lafasakis & Sturmey, 2007; Seiver-ling, Williams, Sturmey, & Hart, 2012).

Current “Interventions” for Autism:

With so many interventions available that claim to help individuals with autism, it can be confusing and difficult to sort out those that are based in science from those based in pseudoscience and those based in anti-science (Green, 1996; Freeman, 2007).

Facilitated Communication (FC) is one intervention that has been embraced for use within the autism community (Biklen, 1990). FC is a method that enables indi-viduals with disabilities including ASD,

cerebral palsy and intellectual disabilities to communicate via the means of a ‘facilita-tor’ – a person who provides pressure to the hand, wrist or arm to help the user overcome physical and emotional problems. They then help ‘guide’ the individual to letters, words or pictures on either a keyboard or a tablet. Following an increase of the use of FC for individuals with autism, the validity of the procedure began to be questioned (Green & Shane, 1993; 1994; Prior & Cummins, 1992). The suggestion was that the cham-pions of FC could not demonstrate, experi-mentally, that the increase in literacy skills and subsequent prose from the disabled individuals were their words and theirs alone. It was proposed that the increase in skills could, perhaps, be attributed to the facilitator ‘writing’ the words independent of the individual. A study found that when simple questions were asked of the indi-viduals using FC, they could only respond correctly when their facilitator also heard the question (Hudson, Melita, & Arnold, 1993). Subsequently, the American Psycho-logical Association (APA) declared FC as “a controversial and unproved communicative procedure with no scientifically demon-strated support for its efficacy” and that it could be construed as being of an “immedi-ate threat(s) to the individual civil and hu-man rights of the person with autism” being facilitated (APA, 1994). Other organizations followed suit shortly after, denouncing the scientific validity of the procedure, stating that there “are good scientific data showing it to be ineffective” (American Academy of Pediatrics, 1998), and stating that it is “a discredited technique” and its use with individuals with disabilities is “unwarranted and unethical” (ABAI, 1995).

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Despite the doubts cast on the efficacy of FC, it is still very much prominent when it comes to “helping” individuals with disabili-ties. It has since been rebranded as the “rapid prompting method” (Halo-Soma, 2016), or “supported typing” and repackaged as an augmentative and alternative communica-tion (AAC) system (Syracuse University, 2016), perhaps to deflect from the lack of scientific evidence on what it purports to do. In fact, a recent review of autism communi-cation interventions explicitly excluded FC from its evaluation due to the very nature of the program (Brignell et al., 2016).

Another intervention that has been used for helping individuals with autism is a sensory-based intervention called Senso-ry-Integration Therapy (SIT). SIT was originally developed to place focus on the neurological processing of sensory infor-mation (Ayres, 1963) and is one of the most prevalent when working with children with various developmental and learning disabili-ties. Reports in the literature suggest that the range of children with sensory processing disorders (difficulties in response regulation and high levels of self-stimulatory behavior) is between 42% and 88% (Baranek, 2002). It is not surprising, therefore, that 82% of occupational therapists report that SIT was “always” used when working with children on the autism spectrum (Watling, Deitz, Kan-ney, & McLaughlin, 1999). Proponents of sensory-integration as an intervention for au-tism believe that individuals diagnosed with ASD may be either hyper- or hyposensitive to sensory input (Cook, 1990), which has an impact on their sensory systems. Therefore, an intervention based on a “sensory diet” is introduced that helps in the areas of under- or overstimulation (Alhage-Kientz, 1996).

The Son-Rise Program, known in the United Kingdom as the Option Method, is another common program utilized for indi-viduals with an autism spectrum disorder. The home of the Son-Rise Program, the “Autism Treatment* Center of America,” state on their website that the program “teaches a specific and comprehensive system of treatment and education <…> to help families and caregivers enable their children to dramatically improve in all areas of learning, development, com-munication and skill acquisition” (Autism Treatment Center of America, 2016). It does so by offering “highly effective educational techniques” in a “one-on-one, home-based, child-centered program.” The program itself is extremely time-intensive, with parents implementing the child’s program for the majority of the day (Powell & Jordan, 1993). Parents attend a one-week training course and, following that, attend advanced group training courses with ongoing support provided by telephone or video conferenc-ing. However, a study of parents in the UK utilizing the Son-Rise Program found that most did not receive feedback or support on program implementation, and that over half of the respondents had reported that they did not avail of the ongoing training pro-grams (Williams, 2006). Yet, 52% of these parents found the program very effective. The majority of the research on the effec-tiveness of the Son-Rise Program is based

* The term treatment within the context of dis-cussions on autism is contentious. The term is often associated with medical interventions. We prefer the term intervention because it does align with a medi-cal perspective but is more in line with the educational expectations of attempts to help children acquire skills that benefit them, insofar as new skills give them more choices in life.

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on anecdotal evidence from parents who have taken part in the program with their child. Even the Autism Treatment Center of America acknowledge that “to date there is very little published research on the Son-Rise Program” (Autism Treatment Center of America, 2016).

A program known as the Treatment and Education of Autistic and Related Commu-nication Handicapped Children (TEACCH), devised by Schopler and Reichler (Autism Speaks, 2016), has generated considerable interest both in empirical research and service demand. Following a survey of 552 parents of children with autism across the world, 30% reported that they still used or had used the TEACCH program (Green et al., 2006), and that TEACCH is frequently used as a special education program in many schools (Hess, Morrier, Heflin, & Ivey, 2008). Unlike other educational interventions, the TEACCH pro-gram was developed specifically for children with autism through an understanding of the core deficits of the diagnosis.

A “structured teaching” method un-derpins the methodological framework of TEACCH, which includes an assortment of teaching principles and strategies based on the learning types of an individual diag-nosed with autism, including strengths in visual processing and difficulties in social communication, attention and executive function (Autism Speaks, 2016). It has been suggested that the TEACCH program builds on the behavioral models of education. This is done by placing emphasis on structure to teach new behaviors, targeting and teaching new skills, defining conditions where be-haviors should occur and the consequences of behaviours through a shaping procedure (Mesibov, 1997). The literature supports the

efficacy of TEACCH in different settings and when implementing for different durations (Welterlin, Turner-Brown, Harris, Mesibov, & Delmolino, 2012). Results also demon-strate improvements in children’s indepen-dent work skills as well as improvements in parental ability to structure the environment and prompt during teaching. Improvements have also been reported in both communica-tion and social skills as well as decreases in inappropriate behaviors (Mesibov, 1997).

The most popular way for addressing au-tism with the most robust scientific evidence to support its efficacy is Applied Behavior Analysis (ABA), the applied branch of the science of behavior analysis. It focuses on improving language deficits, imitation skills, self-help and independence, pre-aca-demics and social skills (Sturmey & Fitzer, 2007). All programs designed to develop these skills are tailored to meet the needs of each individual using known principles of learning. Skills are broken into discrete components and are initially taught on a one-on-one basis either in a home or school setting (with planned generalization), using technologies and principles such as discrete trial teaching, shaping, reinforcement, chaining, prompting and prompt fading as well as extinction (Duker, Didden, & Siga-foos, 2004, cited in Peters-Scheffer, Didden, Korzilius, & Sturmey, 2011).

Over the past 40 years, there has been a large body of literature published that has shown behavior analytic technolo-gies to be effective in reducing problem behavior and increasing appropriate skills within a number of different areas, which are not autism-specific. The evidence for behavioural-based interventions have come to the forefront of autism literature with

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a review on outcome studies recognizing Intensive Behavioral Intervention (IBI) as the most effective intervention for autism (Smith, 2009). The research has shown that statistically, there is a significant relation-ship between ABA-based interventions and children considered to have achieved “optimal outcomes” – those children who no longer meet the criterion to be diagnosed as ASD as well as attaining normal levels of cognitive function (Orinstein et al., 2014) or the achievement of “normative functioning, defined by standard psychological methods and practical outcomes” (Healy, O’Connor, Leader, & Kenny, 2008). The American Academy of Paediatrics has recommended that children displaying traits associated with autism be screened from 18 months in a bid to aid early intervention efforts. Early Intensive Behavioral Intervention (EIBI) (i.e., the delivery of ABA intervention at an early age) is the only intervention for au-tism that has been endorsed by the Surgeon General of the United States (United States Surgeon General, 1998). It has been identi-fied as being effective when compared with those with no intervention controls or with eclectic/autism specific special education interventions (Eikeseth, 2009; Rogers & Vismara, 2008). Independent review panels consistently agree that EIBI/ABA is effec-tive and that the research literature “meets high standards of scientific evidence” (Larsson, 2013). It has been estimated that the annual cost to the UK for autism is £32 billion in specific interventions, lost earn-ings, care and support for both children and adults with the diagnosis (Buescher, Ciadav, Knapp, & Mandell, 2014), so investing in EIBI could potentially lead to long-term savings in both social and financial costs.

Parent Training

Training teachers and staff in various insti-tutions has been a defining feature of behav-ioral intervention since its inception (Kaz-din, 1997). The next logical step would be to train parents in how to implement behavior change programs. Schopler and Reichler (1971) highlighted the importance of pa-rental involvement in any part of a program for children with autism. The importance of parental involvement in educating children with disabilities has been well-documented (Neef, 1995; Lafasakis & Sturmey, 2007; Seiverling et al., 2012), with parent training being the most common intervention used to address behavioral problems in children (Carr, 1999). Children with a diagnosis of an autism spectrum disorder and associated difficulties (aside from those within the triad of impairments), such as cognitive impairments and difficulties learning from their natural environment, benefit from tar-geted parent education to help achieve their full potential (National Research Council, 2001). The very nature of the autism diag-nosis, with associated challenging behaviors for some individuals, would suggest that the need for parent training is significant. Therefore, parental training interventions should be addressed as an option to facilitate service demand deficits. Parent-led behav-ioral interventions for young children with ASD have many advantages. Rather than relying on waiting lists to access services, parents are able to implement programs earlier, thereby providing early interven-tion. Disseminations of the appropriate intervention through training programs are more cost-effective to facilitate (Wetherby et al., 2014). Other benefits that have been

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attributed to effective parent training in-clude an increase in family satisfaction and the reduced chance of the child being placed in a residential setting (Harrold, Lutzker, Campbell, & Touchette, 1992). Conversely, despite the evidence that shows the benefits of parent-led interventions, data suggest that some EIBI programs do not receive either the frequency or quality of supervi-sion that has been specified in programs with the best child outcomes (Mudford, Martin, Eikeseth, & Bibby, 2001), result-ing in lesser overall gains than clinic-based programs.

Parent training refers to “educative in-terventions with parents that aim to help them cope better with the problems they experience with their children” (Callias, 1994, cited in O’Reilly, 1995, p. 63). Par-ents are the primary caregiver, thus playing a critical role in teaching and managing problem behavior exhibited by individuals with autism and other disabilities. This can help reduce the cost of therapy and promote generalization (Matson, Mahan, & Matson, 2009) as well as a potentially high level of reinforcement for parents when implement-ing programs that result in positive behavior change (McClannahan, Krantz, & McGee, 1982).

There are numerous terms to describe parent training within the literature: “parent education” (Schultz, Schmidt, & Stichter, 2011), “in-home training” (Seung, Ash-well, Elder, & Valcante, 2006), “parent implemented” (Ingersoll & Gergans, 2006), “parent-mediated” (Wainer & Ingersoll, 2013) and “parent-assisted training” (Fran-kel et al., 2010). The objective of all parent training is to provide parents with informa-tion, teach them new skills and supplement

or augment current parenting strategies (Brookman-Frazee, Stahmer, Baker-Eric-zen, & Tsai, 2006). If these objectives are met, there is the potential for improvement in long-term child outcomes (Simpson, 2001).

The advantage of parent training is that it is comprehensive, has the ability to target multiple functions and is adaptable to the needs of the parent, the behavior problems they are managing and/or the skill deficits of each child. Yet, Bearss, Burrell, Stewart and Scahill (2015) suggested that parent training involves “a variety of treatments that may or may not share common features” (p. 2). They suggest that this may be because the complexity of ASD and associated skill deficits lead to a myriad of interventions that are inconsistent in what they purport to offer. Ultimately, though, parent training refers to “educative interventions with par-ents that aim to help them cope better with the problems they experience with their children” (Callias, 1994, cited in O’Reilly, 1995, p. 63).

The benefits of parent training have been acknowledged as an essential component of successful interventions for children with an autism diagnosis (National Research Council, 2001). In fact, the momentum for parental involvement in educating their children on the spectrum has been growing and has evolved to “generate positive child and family outcomes” (Gavidia-Payne & Hudson, 2002, p. 42). Research has focused on interventions (in relation to challenging behavior) that are “proactive, positive and strengthen both parents’ and children’s skills in natural settings” (Gavidia-Payne & Hudson, 2002, p. 32). Other research has indicated that parents can be effective

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implementers of behavioral, social and communication programs for their children (Koegel et al., 1996). A central point in the evidence-based intervention literature is the importance of training parents in skill devel-opment across a variety of skills domains, such as feeding programs (Sharp, Burrell, & Jaquees, 2013), social skills (Mandelberg et al., 2013), joint attention (Rocha, Shcreib-man, & Stahmer, 2007) and sleeping (Reed et al., 2016).

Other benefits for parent-led behav-ioral interventions, apart from being able to implement programs regardless of waiting lists, also include their cost effectiveness, family satisfaction and the reduced chances of a child being placed in a residential set-ting (Lutzker, 1993; Wetherby et al., 2014). By training parents specifically in a number of strategies to help increase appropriate behaviors and teach new skills, there is an increased probability of the generalization of these skills to new settings and skills (Koegal et al., 1982). Training parents to implement behavior interventions also makes sense in simple practical terms, be-cause they can implement programs outside of the “traditional” teaching times – such as holidays – therefore providing children with multiple teaching opportunities in many different situations that might not happen in a clinic or school setting. Parents, then, should be placed in a more central role in their child’s education, as they have more opportunities to teach new skills on an ongoing daily basis (Mahoney & Wiggers, 2007). As children learn within the context of their family setting, it makes sense that intervention techniques are transferable across all settings which the child and fam-ily frequent (Dunst et al., 2001).

Knowing how to transfer knowledge and skills from professionals to parents is “essential if evidence-based parent-implemented interventions are to be suc-cessfully delivered in community settings” (Stahmer et al., 2016, p. 3). Indeed, there are data to suggest that some Early Inten-sive Behavioral Intervention (EIBI) pro-grams do not receive either the frequency or quality of supervision that has been specified in programs with the best child outcomes (Mudford et al., 2001), resulting in lesser intervention gains than clinic-based programs. Fortunately, some studies have shown that parents can be trained to implement programs to a high degree of fidelity within 5–24 hours of training over 2–12 weeks (Vismara, Colombi, & Rogers, 2009; Kasari, Gulsrud, Wong, Kwon, & Locke, 2010).

Overall, there appears to be an over-whelming consensus that parental involve-ment can have huge benefits to an individual with an autism spectrum disorder. Yet, as with any intervention, there are potential shortcomings, and the professionals in-volved with the families need to be prag-matic about their expectations. A random-ized control design assessing the differences in general parent training versus training in intensive Applied Behavior Analysis (ABA) found better outcomes for inten-sive intervention (Smith, Groen, & Wynn, 2000). However, the same study found that child outcomes in the parent training group (while statistically less successful on some measures) were clinically comparable.

Parent training and the parent imple-mentations of programs can require a substantial amount of time and energy; therefore, considerations of other factors

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that may have impact on the family need to be addressed. These issues include time demands, particularly if there are younger children in the home (Matson et al., 2009), and the ability to accurately and consistently implement programs (Mudford et al., 2001). However, the adherence to programs in community-based ABA programs, where parents are the main therapists, has been found to be sporadic and with inconsistent applications of program recommendations or no implementations of intervention at all (anecdotal evidence). Attendance at a train-ing event will not necessarily guarantee the implementation of training at home. Therefore, it would be prudent to begin by not only focusing on the variables impact-ing the child’s behavior but also on those variables that impact the parent’s behavior (Stocco & Thompson, 2015). Allen and Warzak (2000) state that medical literature looks at adherence as a result of subject variables, e.g., subject demographics, the perception of illness and the benefits of treatment rather than “adherence behavior as a function of its consequences” (Allen & Warzak, 2000, p. 374). They proposed the use of a functional assessment to determine the contingencies that could strengthen or weaken adherence to a behavioral interven-tion. The contingencies which they identi-fied as having an impact include:• “Treatment” effectiveness as a prerequi-

site for success;• Establishing operations;• Failure to establish intermediate out-

comes as reinforcers;• Failure to disestablish competing social

approval as a reinforcer;• Stimulus generalization;

• Trained insufficient exemplars;• Trained a narrow range of setting stimuli;• Weak rule following;• Response acquisition;• Consequent events.

Accordingly, the design of any parent training program should take these con-tingencies into consideration to maximize the chances of success for both parents and children.

One-on-One Parent Training Versus Group Events

There are currently a range of strategies that are used to implement a parent training pro-gram. Two of the most utilised are “one-on-one sessions,” where parents practice skills demonstrated by the therapist and “group-sessions,” where a similar peer group ac-cesses the training. Each strategy has its own advantages and disadvantages. Cunningham et al. (2008) suggest that one-on-one training (that which is conducted individually with both the parent and the child, led by a profes-sional up to twice a week for a number of months) is the preferred choice by many par-ents. During one-on-one training sessions, parents are provided with access to a service that is tailored to the individual needs of their family. Other advantages include the possi-bility that a parent may disclose more to the practitioner in the absence of an audience, and that there is also a reduced risk of a lack of individual participation. Individual train-ing may also afford greater accountability, as a lack of participation can be addressed much quicker than in group sessions (Piper, 2011). Whilst topics and principles covered within a session are constant, it is the unique

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application of these to parent-specific issues that give them merit. One-on-one training, however, can be costly when compared to group training.

The one-on-one parent training models have the most empirical evidence to support their use (Ingersoll & Dvortcsak, 2006). One such study is that of Alpert and Kaiser (1992), wherein the scholars taught six parents to successfully implement a natural language program with their children who had language impairments. There were three specific elements to this training – clinic-based training, home training and a generalization training session. Results demonstrated that these parents were able to successfully implement the training program to increase language, and the ef-fects were generalized to other settings and maintained over time. Another study using one-on-one training sessions compared the effectiveness of individual parent train-ing with a parent education training event (Bearrs et al., 2015). The individual par-ent training sessions were far superior to the education sessions in overall behavior improvement. Another study compared the effects of group training sessions on increas-ing communication skills with one-on-one training sessions (Wetherby et al., 2014). Both groups resulted in skill increases, but one-on-one training resulted in substantially more gains across all skills. This type of individualized training enables the behavior analyst to teach parents specific skills that are based on the unique needs of their child. The programs are tailored precisely to take into consideration all of the other demands that the family life entails; thereby, the expectations of programs are reduced and systematically increased as program imple-

mentation continues and skill acquisition rates increase. However, it may take time to specifically train each of the components to a certain level of mastery in order to maintain the program’s integrity (Cook, Subramaniam, Poe, & St. Peter, 2015).

Group parent training events have been used successfully in community-based ABA programs. These types of events, according to Brightman, Baker, Clark and Ambrose (1982), require at least half the professional time per family compared to one-on-one sessions. These types of events would there-fore be more time-efficient for agencies and service delivery providers than one-on-one sessions. Providing a group parent training session is, therefore, more cost-effective in reducing the overall cost of the intervention on a per-client basis (Cunningham et al., 1995). A comprehensive review by Furlong et al. (2012) concluded that parent training programs delivered in group settings are effective and cost-effective for “improving child conduct problems, parental mental health and parenting skills.” However, they recommended that more studies as-sess the long-term effectiveness of such programs as gains have been noted to be short-lived. One study aimed to increase positive social interactions in families of adolescents with behavior problems (Serna, Schumaker, Sherman, & Sheldon, 1991). Results showed that interactions within the parent group and the adolescent group increased in the group sessions, but generalization did not occur in non-trained settings. This would suggest that consid-eration must be given to the identifica-tion of contingencies that will ensure the generalization of new skills to non-trained environments.

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Group-based parent training events are typically delivered using interactive and collaborative teaching. Facilitators introduce key behavioral principles that can be utilized in many ways to improve the parenting skills of those attending. Parents then practice the skill they have just been taught and receive corrective feedback and reinforcement on accurate skill rehearsal. Key elements that help create effective parent-training pro-grams are those that include learning how to use positive parenting skills (reinforcement and alternatives to the use of an aversive), learning to observe behaviors, modelling, re-hearsal, peer support, discussion and home-work assignments (Furlong et al., 2012). The number of parent support groups established in N. Ireland and in the UK more generally (AutismNI, 2016; NAS, 2016) suggests that peer support from another parent experienc-ing similar difficulties is beneficial. This “shared experience” can prove invaluable in behavioral parent training, particularly group events. The additional element of peer support may increase participation in the training as well as cultivate friendships with other individuals who understand the autism diagnosis and help “normalise” the experiences of those attending (Cox, Vino-gradov, & Yalom, 2008). However, a study that compared individual home training with group training events showed that those children whose parents received individual-ized home support made the greatest gains (Wetherby et al., 2014).

Specific Strategies for Training Parents

In view of the overwhelming amount of evidence, it is easy to see why parents of

children with an autism spectrum disorder should be given access to training. How-ever, published research demonstrates that there are many different issues concerned with ways to teach, what to teach and how to teach. One of the seven dimensions of Ap-plied Behavior Analysis is being “effective” (Baer, Wolf, & Risley, 1968): “if the ap-plication of behavioral techniques does not produce large enough effects for practical value, then application has failed” (p. 96). What is vital, then, regardless of which technique is used for parent training, is that training should be “effective” in order to be relevant. Behavioral Skills Training (BST) is a training/teaching package that consists of a number of methods that, when used together, result in an effective education for individuals. It is defined by Ward-Horner and Sturmey (2012) as “an effective train-ing package that consists of instructions, modelling, rehearsal, and feedback” (p. 75). A verbal or written instruction can be used for the instruction component of BST. The goal is to ensure that the participant understands how to competently complete the skill or the behavior of interest. The next step – modelling – is when the skill is demonstrated and followed by rehearsal, during which the opportunity to practice is given. This role-play element will help the learner practice what they observed during the instruction and modelling components in a safe, controlled manner. Feedback is the last component of the BST package, where, following the previous steps, corrective feedback is provided by the trainer. BST has been shown to be effective in training parents how to implement behavioral-based interventions, such as food selectivity (Seiv-erling et al., 2012). This study demonstrated

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that parents could successfully implement a feeding program but also that the parents reported the modelling component to be the most helpful. BST was successfully used to teach three special education teachers how to implement a discrete trial teaching pro-cedure with a child with ASD (Sarokoff & Sturmey, 2004). Following BST, there were significant gains in the teachers’ percentage of correct discrete-trial responses. BST has also been successful for teaching an adult with autism to converse with a peer – suc-cesses that were maintained over time (Kor- nacki, Ringdahl, Sjostrom, & Nuernberger, 2013). Parents in Saudi Arabia were also successfully taught how to implement a discrete-trial procedure with their children using BST; results showed that there was a generalization of this skill to non-taught examples, long-term maintenance and im-provements in child behaviors (Eid et al., 2017). BST has been demonstrated as being an effective way to teach parents, teachers and individuals with developmental dis-abilities how to successfully teach, maintain and generalize new skills. For parents, the modelling and rehearsal components enable them to observe and practice a skill that will help them in the absence of a professional.

As technology has developed, so too have the ways that parent training packages are presented. One such development is the addition of video modelling as a training component. Video modelling is a visual teaching method where individuals watch someone engage in a skill on a DVD or video and then go and practice or imitate that observed skill. The Incredible Years© is a program that has evaluated the use of videos to deliver parent training programs. The program focuses on “strengthening

parenting competencies and fostering parent involvement in children’s school experi-ences, to promote children’s academic, social and emotional skills and reduce conduct problems” (The Incredible Years, 2017). The videos depict parent-child in-teractions to foster a discussion of behavior management principles in a group training environment. Other studies have shown that incorporating video modelling into parent training events is superior to those on a waiting list for services (Webster-Stratton, & Hammond, 1997). A video modelling intervention was used in 2012 by Kahn (as cited in Majszak, 2015) to increase positive parenting statements to their children with autism. There was only a slight improve-ment in parental behavior but a decrease in child problem behaviors as reported by the parents, which could suggest that the strategy is not effective as a stand-alone intervention. Video modelling has also been used to teach individuals with an autism diagnosis road safety skills (PEAT, 2018b) and navigation through an airport (PEAT, 2018c). These resources were filmed from the perspective of a child with a voiceover detailing the situ-ation within each video. “Autism in the air” embraced the use of video models alongside a practical application of these skills in con-junction with a local airport (Ruddy et al., 2015). Children and their families were able to engage in the skills that had been learned through the video models in the actual setting of an airport (The Irish News, 2016). These examples demonstrate how developments allow for newer technologies to train both parents and children.

Manualized training packages have also been used in parent training packages uti-lizing a structured curriculum to introduce

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parents to various training tools to help their children with ASD. Training manuals are important when designing a formal train-ing program. They help ensure that there is consistency in the presentation of the train-ing packages and that all materials required, following the training event, are available in one place. Butter (2007) used a manualized training package to reduce non-compliant behavior and increase adaptive behaviors in children with Pervasive Developmental Disorders (PDD). Parental satisfaction and adherence to the program were excellent and there were parent-reported reductions in non-compliance (39%) and increases in daily living skills (19%). Additionally, vignettes of behavior, as well as role-play, were used to help augment the manual training package. Simple Steps (Simple Steps, 2018) is an innovative multimedia teaching platform that focuses on teaching the science of ABA to parents rather than offering a manualized training package. The platform teaches the application of key behavioral principles to parents, profes-sionals and students across the world with the aid of animations, video models and an accompanying textbook. This multimedia tutorial comprises an eight-step program that teaches users how to collect data on observable behaviors, aids in understand-ing behavioral functions and helps in understanding how to increase/teach new skills or behaviors and how to decrease inappropriate behaviors. It is available in nine European languages with the Czech translation supported and sponsored by the biggest state-owned insurance company (PEAT, 2018a). This training package can be utilized for both one-on-one training sessions or within group-session events.

Another example of incorporating the use of animation and manualized learn-ing for training parents is a tutorial titled “Challenging Behaviour” (Keenan, Gal-lagher, Booth, Dillenburger, & Moxon, 2016). This online platform enables parents to understand how challenging behaviors can continue throughout the lifespan of the individual with specific needs if not man-aged correctly. Through the use of anima-tions, difficult concepts are presented to the viewer/reader, allowing for exemplars to be introduced, which may help reduce the frequency and/or duration of behavior problems.

The amount of parent training, particular-ly in the field of ASD, is growing, yet there appears to be a myriad of different pack-ages proposing different claims, making it difficult to distinguish the effective from the non-effective. However, the consensus appears to be that parents can develop new skills and understandings with training events based on behavioral underpinnings, which “result in more effective treatment for their children” (Matson et al., 2009, p. 872).

As the prevalence rates for diagnosing autism spectrum disorders continue to increase, it would make sense that parents and those individuals with autism are of-fered interventions that can help target skill deficits and reduce the negative impact autism has on the individual’s quality of life as well as that of families as a whole. Since autism is diagnosed through behav-ioral observations and caregiver reports, it stands to reason that the intervention used to help would be behavioral in nature. The most popular way with the most robust scientific evidence to support its efficacy is Applied Behavior Analysis, a practical

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application of the principles of the science of behavior analysis.

In conclusion, the parents of children with autism spectrum disorders are deal-ing, at times, with highly stressful situa-tions, and providing them with a level of empowerment through parent training has established that the involvement of parents as the facilitators of interventions can have positive outcomes for individuals on the autism spectrum. It is essential that this

training has a good, substantial science base to help augment any claims. Training prac-tices should address the needs of the parents and have an element of being tailored to target specific family requirements. The research also shows that training practices that are behavioral in nature will result in substantial benefits for the wider family circle. The bottom line is that education on autism awareness alone does not have the same far-reaching consequences.

REFERENCES

Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. W., Osmond, G., & Murphy, M. M. (2004). Psychological well-being and coping in mothers of youths with autism, Downs syndrome, or fragile X syndrome. American Journal on Mental Retardation, 109, 237–254.

Allen, K. D., & Warzak, W. J. (2000). The problem of parental nonadherence in clinical behavior analysis: Effective treatment is not enough. Journal of Applied Behavior Analysis, 33 (3), 373–391.

Alpert, C. L., & Kaiser, A. P. (1992). Training parents to do milieu language teaching with their language-impaired preschool children. Journal of Early Intervention, 16, 31–52.

American Academy of Pediatrics (1998). Auditory integration training and facilitated communication for autism. Pediatrics, 102, 431–433.

American Psychological Association (1994). Reso-lution on facilitated communication by the American Psychological Association. Adopted in Council, August 14, 1994, Los Angeles, California.

Association for Behavior Analysis (1995). State-ment on facilitated communication. ABA Newsletter, 18 (2).

AutismNI (2015). Statistics. Retrieved Jan. 27, 2016, from http://www.autismni.org/statistics.html

Autism Speaks (2016). TEACCH Autism Pro-gram. Retrieved Mar. 19, 2018, from https://www.autismspeaks.org/what-autism/treatment/teacch

Autism Treatment Center (2015). The Son-Rise Program. Retrieved April 14, 2018, from http://www.autismtreatmentcenter.org/

Ayres, A. J. (1963). Eleanor Clark Slagle Lecture. The development of perceptual motor abilities: A theoretical basis for treatment of dysfunction. American Journal of Occupational Therapy, 17, 221–225.

Baer, D. M., Wolf, M. W., & Risley, T. R. (1968). Some current dimensions of applied behaviour analysis. Journal of Applied Behavior Analysis, 1 (1), 91–97.

Baranek, G. T. (2002). Efficacy of sensory and motor interventions for children with autism. Jour-nal of Autism and Developmental Disorders, 32 (5), 397–422.

Baker-Ericzen, M. J., Brookman-Frazee, L., & Stahmer, A. (2005). Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Research and Practice for Persons with Severe Disabilities, 30, 194–204.

Bearss, K., Burrell, T. L., Stewart, L., & Scahill, L. (2015). Parent training in autism spectrum disorder: What’s in a name? Clinical Child and Family Psychol-ogy Review, 18 (2), 170–182.

Benson, P. R. (2010). Coping, distress, and well-being in mothers of children with autism. Research in Autism Spectrum Disorders, 4 (2), 217–228.

Benson, P. R. (2014). Coping and Psychological Adjustment Among Mothers of Children with ASD: An Accelerated Longitudinal Study. Journal of Autism and Developmental Disorders, 44, 1793–1807.

Biklen, D. (1990). Communication unbound: Autism and praxis. Harvard Educational Review, 60, 291–314.

Blacher, J., & McIntyre, L. L. (2006). Syndrome specificity and behavioural disorders in young people

89

with intellectual disability: Cultural differences in fam-ily impact. Journal of Intellectual Disability Research, 50 (3), 184–198.

Bouma, R., & Schweitzer, R. (1990). The impact of chronic childhood illness on family stress: A com-parison between autism and cystic fibrosis. Journal of Clinical Psychology, 46, 722–730.

Boyd, B. A. (2002). Examining the relationship between stress and lack of social support in mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 17, 208–215.

Brignell, A., Song, H., Zhu, J., Suo, C., Lu, D., & Morgan, A. T. (2016). Communication intervention for autism spectrum disorders in minimally verbal children (Protocol). Cochrane Database of Systematic Reviews, 1–16.

Brightman, R. P., Baker, B. L., Clark, D. B., & Ambrose, S. A. (1982). Effectiveness of alternative parent training formats. Journal of Behavior Therapy and Experimental Psychology, 13, 113–117.

Brobst, J. B., Clopton, J. R., & Hendrick, S. S. (2009). Parenting children with autism spectrum dis-orders the couple’s relationship. Focus on Autism and Other Development Disabilities, 24, 38–49.

Brookman-Frazee, L., Stahmer, A., Baker-Eric-zen, M. J., & Tsai, K. (2006). Parenting interventions for children with autism spectrum and disruptive behavior disorders: Opportunities for cross fertiliza-tion. Clinical Child and Family Psychology Review, 9, 181–200.

Buescher, A. V., Ciadav, Z., Knapp, M., & Man-dell, D. S. (2014). Costs of autism spectrum disorders in the United Kingdom and the United States. Pediatrics, 168 (8), 721–728.

Butter, E. M. (2007). Parent training for children with pervasive developmental disorders: A multi-site feasibility trial. Behavioral Interventions, 22, 179–199.

Carr, A. (1999). Handbook of Child and Adolescent Clinical Psychology: A Contextual Approach. London: Routledge.

CDCP (2016). Autism Spectrum Disorder (ASD). Retrieved Jan. 27, 2016, from http://www.cdc.gov/ncbddd/autism/data.html.

Cook, D. G. (1990) A sensory approach to the treatment and management of children with autism. Focus on Autism and Other Developmental Disabilities, 5 (6), 1–19.

Cook, J. E., Subramaniam, S., Poe, S., & St. Pe-ter, C. (2015). Global measures of treatment integrity

may mask important errors in discrete-trail training. Behavior Analysis in Practice, 8, 37–47.

Cox, P., Vinogradov, S., & Yalom, I. (2008). Group Therapy. In R. E. Hales, S. Yadofsky, G. Gabbard (Eds.), The American Psychiatric Publishing Textbook of Psychiatry (5th ed.). Arlington, VA: American Psy-chiatric Publishing.

Cunningham, C. E., Deal, K., Rimas, H., Bu-chanan, D. H., Gold, M., Sdao-Jarvie, K., & Boyle, M. (2008). Modeling the information preferences of parents of children with mental health problems: A discrete choice conjoint experiment. Journal of Ab-normal Child Psychology, 36, 1123–1138.

Deater-Deckard, K., & Scarr, S. (1996). Parenting stress among dual-earner mothers and fathers: Are there gender differences? Journal of Family Psychol-ogy, 10, 45–59.

Donenberg, G., & Baker, B. L. (1993). The impact of young children with externalizing behaviors on their families. Journal of Abnormal Child Psychology, 21 (2), 179–198.

Dunst, C. J., Bruder, M. B., Trivette, C. M., Hamby, D., Raab, M., & McLean, M. (2001). Charac-teristics and consequences of everyday natural learn-ing opportunities. Topics in Early Childhood Special Education, 21, 68–92.

Eid, A. M., Aljaser, S. M., AlSaud, A. N., Asfa-han, S. M., Alhaqban, O. A., Mohtasin, R. S., ..., Fryling, M. (2017). Training parents in Saudi Arabia to implement discrete trial teaching with their children with autism spectrum disorder. Behavior Analysis in Practice, 10 (4), 402–406.

Eikeseth, S. (2009). Outcome of comprehensive psycho-educational interventions for young children with autism. Research in Developmental Disabilities, 30, 158–178.

Eisenhower, A. S., Baker, B. L., & Blacher, J. (2005). Preschool children with intellectual disabil-ity: Syndrome specificity, behaviour problems, and maternal well-being. Journal of Intellectual Disability Research, 49, 657–671.

Factor, D. C., Perry, A., & Freeman, N. (1990). Stress, social support and respite care use in families with autistic children. Journal of Autism and Develop-mental Disorders, 20, 139–146.

Frankel, F., Myatt, R., Sugar, C., Whitman, C., Gorospe, C. M., & Laugeson, E. (2010). A randomized controlled study of parent-assisted Children’s Friend-ship Training with children having autism spectrum

90

disorders. Journal of Autism and Developmental Disorders, 40 (7), 827–842.

Freeman, S. K. (2007). The Complete Guide to Autism Treatments: A Parent’s Handbook: Make Sure Your Child gets What Works. Lynden, WA: SKF Books.

Furlong, M., McGilloway, S., Bywater, T., Hutch-ings, J., Smith, S. M., & Donnelly, M. (2012). Behav-ioural and cognitive-behavioural group-based parent-ing programmes for early-onset conduct problems in children aged 3 to 12 years. Cochrane Database Syst Rev. Feb 15; (2):CD008225. doi: 10.1002/14651858.CD008225.pub2.

Gavidia-Payne, S., & Hudson, A. (2002). Be-havioural supports for parents of children with an intellectual disability and problem behaviours: An overview of the literature. Journal of Intellectual and Developmental Disability, 27 (1), 31–55.

Gray, D. E. (2002). Ten years on: A longitudinal study of families of children with autism. Journal of Intellectual and Developmental Disability, 27, 215–222.

Green, G. (1996). Evaluating claims about treat-ments for autism. Retrieved April 14, 2018 from http://www.feathouston.org/wp-content/uploads/2009/11/evaulating_claims.pdf

Green, G., & Shane, H. C. (1993). Facilitated communication: The claims vs. the evidence. Harvard Mental Health Letter, 10, 4–5.

Green, G., & Shane, H. C. (1994). Science, reason, and facilitated communication. Journal of the Associa-tion for Persons with Severe Handicaps, 19, 151–172.

Green, V. A., Pituch, K. A., Itchon, J., Choi, A., O’Reilly, M., & Sigafoos, J. (2006). Internet survey of treatments used by parents of children with autism. Research in Developmental Disabilities, 27 (1), 70–84.

Halo-Soma (2016). A new way of looking at autism. Retrieved July 23, 2016, from http://www.halo-soma.org/main.php?sess_id=dfd49b48b41052d2b71cf5a2755e35af

Harrold, M., Lutzker, J. R., Campbell, R. V., & Touchette, P. E. (1992). Improving parent child in-teractions for families of children with developmen-tal disabilities. J. Behav. Ther. Exp. Psychiatry, 23, 89–100.

Hastings, R. P., & Johnson, E. (2001). Stress in UK families conducting intensive home-based behavioral intervention for their young child with autism. Journal of Autism and Developmental Disorders, 31, 327–336.

Hastings, R. P., Kovshoff, H., Ward, N. J., Degli Espinosa, F., Brown, T., & Remington, B. (2005). Systems analysis of stress and positive perceptions in mothers and fathers of pre-school children with autism. Journal of Autism and Developmental Disorders, 35 (5), 635–44.

Hess, K. L., Morrier, M. J., Heflin, L. J. & Ivey, M. L. (2008). Autism treatment survey: Services received by children with autism spectrum disorders in public school classrooms. Journal of Autism and Developmental Disorders, 38 (5), 961–971.

Healy, O., O’Connor, J., Leader, G., & Kenny, N. (2008). Three years of intensive applied behaviour analysis: A case study. Journal of Early and Intensive Behavior Intervention, 5 (1), 4–22.

Hoogenhout, M., & Malcolm-Smith, S. (2016). Theory of mind predicts severity level in autism. Autism, 1–11.

Hudson, A., Melita, B., & Arnold, N. (1993). Assessing the validity of facilitated communication: A case study. Journal of Autism and Developmental Disorders, 1, 165–173.

Incredible Years Parenting Programs (2017). Re-trieved Feb. 3, 2017, from http://www.incredibleyears.com/programs/parent/

Ingersoll, B., & Dvortcsak, A. (2006). Including parent training in the early childhood special educa-tion curriculum for children with autism spectrum disorders. Journal of Positive Behavior Interventions, 8, 78–87.

Ingersoll, B., & Gergans, S. (2007). The effect of a parent-implemented imitation intervention on sponta-neous imitation skills in young children with autism. Research in Developmental Disability, 28 (2), 163–175.

Kasari, C., Gulsrud, A., Wong, C., Kwon, S., & Locke, J. (2010). Randomized controlled caregiver mediated joint engagement intervention for toddlers with autism. Journal of Autism and Developmental Disorders, 40, 1045–1056.

Kazdin, A. E. (1997) Parent management training: Evidence, outcomes and issues. Journal of the Ameri-can Academy of Child and Adolescent Psychiatry, 36, 1349–1356.

Kazdin, A. E., Holland, L., & Crowley, M. (1997). Family experience of barriers to treatment and pre-mature termination from child therapy. Journal of Consulting and Clinical Psychology, 65 (3), 453–463.

Keenan, M., Gallagher, S., Booth, N., Dillen-burger, K., & Moxon, P. (2016). Challenging behav-

91

iour. Retrieved April 16, 2018, from http://peatni.org/challenging-behaviour/

Koegel, R. L., Bimbela, A., & Schreibman, L. (1996). Collateral effects of parent training on family interactions. Journal of Autism and Developmental Disorders, 26, 347–359.

Koegel, R. L., Schreibman, L., Britten, K. R., Burke, J. C., & O’Neill, R. E. (1982). A Comparison of Parent Training to Direct Child Treatment. In R. L. Koegel, A. Rincover, & A. L. Egel (Eds.), Educating and understanding Autistic Children (pp. 260–279). San Diego, CA: College-Hill Press.

Kornacki, L. T., Ringdahl, J. E., Sjostrom, A., & Nuernberger, J. E. (2013). A component analysis of a behavioral skills training package used to teach conversational skills to young adults with autism spectrum and other developmental disorders. Research in Autism Spectrum Disorders, 7, 1370–1376.

Lafasakis, M., & Sturmey, P. (2007). Training par-ent implementation of discrete-trial teaching: Effects on generalization of parent teaching and child correct responding. Journal of Applied Behavior Analysis, 40, 685–689.

Larsson, E. V. (2013). Is Applied Behavior Analysis (ABA) and Early Intensive Behavioral Intervention (EIBI) an Effective Treatment for Autism? A Cumula-tive Review of Impartial Reports. The Lovaas Institute. Retrieved April 16, 2018 from http://www.behavior.org/resources/649.pdf

Lawton, J. M., & Sanders, M. R. (1994). Design-ing effective behavioural family interventions for stepfamilies. Clinical Psychology Review, 14 (5), 463–496.

Lutzker, J. R. (1993). Behavior Analysis for Developmental Disabilities: The Stages of Efficacy and Comparative Treatments. In T. R. Giles (Ed.), Handbook of Effective Psychotherapy (pp. 89–106). NY: Plenum Press.

Mahoney, G., & Wiggers, B. (2007). The role of parents in early intervention: Implications for social work. Children & Schools, 29 (1), 7–15.

Mandelberg, J., Laugeson, E. A., Cunning-ham, T. D., Ellingsen, R., Bates, S., & Frankel, F. (2013). Long-term treatment outcomes for parent-assisted social skills training for adolescents with au-tism spectrum disorders: The UCLA PEERS program. Journal of Mental Health Research in Intellectual Disabilities, 7 (1), 45–73.

Majszak, H. (2015). A review of parent training

programs targeting noncompliant behaviors for individuals with autism spectrum disorder. Retrieved Feb. 3, 2017, from http://ed-psych.utah.edu/school-psych/_documents/grants/autism-training-grant/Errorless-Compliance-Training.pdf

Matson, M. L., Mahan, S., & Matson, J. L. (2009). Parent training: A review of methods for children with autism spectrum disorders. Research in Autism Spectrum Disorders, 3, 868–875.

McStay, R. L, Dissanayake, C., Scheeren, A., Koot, H. M., & Begeer, S. (2013). Parenting stress and autism: The role of age, autism severity, quality of life and problem behaviour of children and ado-lescents with autism. Autism, 18 (5), 502–510.

Mesibov, G. B. (1997). Formal and informal mea-sures on the effectiveness of the TEACCH programme. Autism, 1, 25–35.

McIntyre, L. L., Blacher, J., & Baker, B. L. (2002). Behaviour/mental health problems in young adults with intellectual disability: The impact on families. Journal of Intellectual Disability Research, 46 (3), 239–249.

Mudford, O. C., Martin, N. T., Eikeseth, S., & Bib-by, P. (2001). Parent-managed behavioral treatment for preschool children with autism: Some characteristics of UK programs. Research in Developmental Disabilities, 22 (3), 173–182.

National Autistic Society (2016). Our position on the causes of autism. Retrieved June 19, 2015, from http://www.autism.org.uk/get-involved/media-centre/position-statements/causes.aspx

National Health Service (NHS) (2016). Autism Spectrum Disorder (ASD). Retrieved June 19, 2016 from http://www.nhs.uk/conditions/autistic-spectrum-disorder/Pages/Introduction.aspx

National Research Council (2001). Educating Children with Autism: Committee on Educational Interventions for Children with Autism. In C. Lord, & J. McGee (Eds.), Division of Behavioral and Social Sciences and Education. Washington, DC: National Academy Press.

Neef, N. A. (1995). Pyramidal parent training by peers. Journal of Applied Behavior Analysis, 28, 333–337.

Obeid, R., & Daou, N. (2015). The effects of cop-ing style, social support, and behavioral problems on the well-being of mothers of children with Autism Spectrum Disorders in Lebanon. Research in Autism Spectrum Disorders, 10, 59–70.

92

Oelofsen, N., & Richardson, P. (2006). Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. Journal of Intellectual & Developmental Disability, 31, 1–12.

O’Reilly, D. (2005). Conduct Disorder and Beha-vioural Parent Training: Research and Practice. London: Jessica Kingsley Publishers.

Orinstein, A. J., Helt, M., Troyb, E., Tyson, K. E., Barton, M. L., Eigisti, I. M., Naigles, L., & Fein, D. A. (2014). Intervention for optimal outcome in children and adolescents with a history of autism. Journal of Developmental and Behavioral Pediatrics, 35 (4), 247–256.

Orr, R. R., Cameron, S. J., & Dobson, L. A. (1993). Age-related changes in stress experienced by families with a child who has developmental delays. Mental Retardation, 31, 171–176.

PEAT (2018a). Simple steps autism training tool translated into the Czech language. Retrieved April 16, 2018 from https://www.peatni.org/news/view/34/simple-steps-autism-training-tool-translated-into-the-czech-language

PEAT (2018b). Road Safety Video models. Retrieved April 16, 2018, from https://www.peatni.org/road

PEAT (2018c). Autism in the air. Retrieved April 16, 2018, from https://www.peatni.org/resources# videos-peat-services-airport-travel

Peters-Scheffer, N., Didden, R., Korzilius, H., & Sturmey, P. (2011). A meta-analytic study on the ef-fectiveness of comprehensive ABA-based early inter-vention programs for children with Autism Spectrum Disorders. Research in Autism Spectrum Disorders, 5 (1), 60–69.

Piper, W. (2011). Short-term Group Therapies for Complicated Grief: Two Research-based Models. Washington, DC: American Psychological Associa-tion.

Powell, S. D., & Jordan, R. R. (1993). Being sub-jective about autistic thinking and learning to learn. Journal of Educational Psychology, 13 (4), 359–370.

Prior, M., & Cummins, R. (1992). Questions about facilitated communication and autism. Journal of Autism and Developmental Disorders, 22, 331–337.

Reed, H. E., McGrew, S. G., Artibee, K., Surd-kya, K., Goldman, S. E., Frank, K., ..., Malow, B. A. (2009). Parent-based sleep education workshops in autism. Journal of Child Neurology, 24 (8), 936–945.

Rocha, M. L., Schreibman, L., & Stahmer, A. C. (2007). Effectiveness of training parents to teach joint attention in children with autism. Journal of Early Intervention, 29 (2), 154–172.

Rogers, S. J., & Vismara, L. A. (2008). Evidence-based comprehensive treatments for early autism. Journal of Clinical Child and Adolescent Psychology, 37 (1), 8–38.

Ruddy, L., Booth, N., Gaw, M. R., Liao, Y., Dou-vani, K., & Dillenburger, K. (2015). Autism in the Air: using Point of View Priming and Natural Environment Teaching to help children with autism travel by plane. Good Autism Practice, 16 (2), 25–32)

Sarokoff, R. A., & Sturmey, P. (2004). The effects of behavioral skills training on staff implementation of discrete-trial teaching. Journal of Applied Behavior Analysis, 37 (4), 535–538.

Schopler, E., & Reichler, R. J. (1971). Parents as cotherapists in the treatment of psychotic children. Journal of Autism and Childhood Schizophrenia, 1 (1), 87–102.

Schultz, T. R., Schmidt, C. T., & Stichter, J. P. (2011). A review of parent education programs for parents of children with Autism Spectrum Disorders. Focus on Autism and Other Developmental Disabilities, 26 (2), 96–104.

Seiverling, L., Williams, K., Sturmey, P., & Hart, S. (2012). Effects of behavioural skills training on parental treatment of children’s food selectivity. Journal of Ap-plied Behavior Analysis, 45 (1), 197–203.

Serna, L. A., Schumaker, J. B., Sherman, J. A., & Sheldon, J. B. (1991). In-home generalization of social interactions in families of adolescents with behavior problems. Journal of Applied Behavior Analysis, 24 (4), 733–746.

Seung, H. K., Ashwell, S., Elder, J. H., & Val-cante, G. (2006). Verbal communication outcomes in children with autism after in-home father training. Journal of Intellectual Disability Research, 50 (2), 139–150.

Sharp, W. G., Burrell, T. L., & Jaquess, D. L. (2013). The Autism MEAL Plan: A parent-training curriculum to manage eating aversions and low intake among chil-dren with autism. Autism, 18 (6), 712–722.

Simple Steps (2015). The online teaching platform for the treatment of autism. Retrieved Feb 26, 2015, from http://www.simplestepsautism.com/

Simpson, R. L. (2001). ABA and students with autism spectrum disorders: Issues and considerations

93

for effective practice. Focus on Autism and Other Developmental Disabilities, 16, 68–71.

Singer, G. H. S. (2006). Meta-analysis of compara-tive studies of depression in mothers of children with and without developmental disabilities. American Journal on Mental Retardation, 111, 155–169.

Smith, I. E. (2009). The Effectiveness of the Nova Scotia EIBI program. Retrieved Aug. 16, 2016, from http://www.hinnovic.org/the-effectiveness-of-the-nova-scotia-eibi-program/

Smith, T., Buch, G. A., & Gamby, T. E. (2000). Parent-directed, intensive early intervention for chil-dren with pervasive developmental disorder. Research in Developmental Disabilities, 21 (4), 297–309.

Smith, T., Groen, A. D., & Wynn, J. W. (2000). Randomized trial of intensive early intervention for children with pervasive developmental disorder. American Journal of Mental Retardation, 105 (4), 269–285.

Stahmer, A. C., Brookman-Frazee, L., Rieth, S. R., Stoner, J. T., Feder, J. D., Searcy, K., & Wang, T. (2016). Parent perceptions of an adapted evidence-based prac-tice for toddlers with autism in a community setting. Autism, 21 (2), 217–230.

Stocco, C. S., & Thompson, R. H. (2015). Contin-gency analysis of caregiver behavior: Implications for parent training and future directions. Journal of Applied Behavior Analysis, 48 (2), 417–435.

Sturmey, P., & Fitzer, A. (Eds.). (2007). Autism Spectrum Disorders: Applied Behavior Analysis, Evi-dence and Practice. Austin, TX: Pro-Ed.

Syracuse University (2016). What is supported typing? Retrieved April 15, 2018, from http://soe.syr.edu/centers_institutes/institute_communication_inclu-sion/what_is_supported_typing/

Taube-Schiff, M., & Serbin, L. A. (2006). The case of a 10-year-old boy presenting with cognitive delays and behavioral problems: Working with a develop-mentally challenged family. Clinical Case Studies, 5 (4), 345–360.

Teehee, E., Honan, R., & Hevey, D. (2008). Factors contributing to stress in parents of individuals with au-tistic spectrum disorders, Journal of Applied Research in Intellectual Disabilities, 22 (1), 34–42.

The Irish News (2016). Charity helping families living with autism via applied behaviour analysis.

Retrieved April 16, 2018 from http://www.irishnews.com/lifestyle/2016/04/26/news/charity-helps-families-living-with-autism-via-applied-behaviour-analy-sis-495110/

United States Surgeon General (1998). Mental health: A report of the Surgeon General. Washing-ton, DC: Author.

Vismara, L. A., Colombi, C., & Rogers, S. J. (2009). Can one hour per week of therapy lead to last-ing changes in young children with autism? Autism, 13 (1), 93–115.

Wainer, A. L., & Ingersoll, B. R. (2013). Dis-seminating ASD interventions: A pilot study of a distance learning program for parents and profes-sionals. Journal of Autism and Developmental Dis-orders, 43, 11–24.

Watling, R., Deitz, J., Kanney, E. M., & McLaugh-lin, J. F. (1999). Current practice of occupational therapy for children with autism. The American Journal of Occupational Therapy, 53 (5), 498–505.

Ward-Horner, J., & Sturmey P. (2012). Component analysis of behavior skills training in functional analy-sis. Behavioral Interventions, 27, 75–92.

Webster-Stratton, C., & Hammond, M. (1997). Treating children with early onset conduct problems: A comparison of child and parent training interven-tions. Journal of Consulting and Clinical Psychology, 65, 93–109.

Welterlin, A., Turner-Brown, L. M, Harris, S., Mesibov, G., & Delmolino, L. (2012). The home TEACHHing program for toddlers with autism. Journal of Autism and Developmental Disorders, 42 (9), 1827–1835.

Wetherby, A. M., Guthrie, W., Woods, J., Schat-schneider, C., Holland, R. D., Morgan, L., & Lord, C. (2014). Parent-Implemented Social Intervention for Toddlers with Autism: An RCT. Pediatrics, 134 (6), 1084–1093.

Williams, K. R. (2006). The Son-Rise Program intervention for autism: Prerequisites for evaluation. Autism, 10 (1), 86–102.

World Health Organisation (WHO) (2017). Autism Spectrum Disorders. Retrieved April 21, 2017, from http://www.who.int/mediacentre/factsheets/autism-spectrum-disorders/en/

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AUTIZMAS, INTERVENCJOS IR TĖVŲ MOKYMAS

Nichola Booth, Mickey Keenan, Stephen Gallagher

S a n t r a u k a

Visame pasaulyje daugėja sergančiųjų autizmu. Šiame straipsnyje analizuojama, kokius papildo-mus stresorius, tokius kaip psichologinis distresas ar psichikos sveikatos problemos, sukelia vaiko, sergančio autizmu, auginimas. Tyrimai rodo, kad dėl problemų, kurias sukelia autizmo diagnozė ir papildomi reikalavimai tėvams, gali būti naudingos intervencijos, skirtos mokyti juos naujų įgūdžių. Šis straipsnis apžvelgia dažniausiai taikomas in-tervencijas, kurios gali būti pasitelktos, siekiant tėvams suteikti naujų įgūdžių, ir analizuoja, ar jos grįstos mokslu, pseudomokslu ar antimokslu. Taikant

geriausius metodus, grįstus moksliniais įrodymais, tėvai gali būti sėkmingai apmokyti įvairių skirtingų sričių įgūdžių. Straipsnyje aptariami ir grupinio bei individualaus mokymo, taip pat jų komponentų pliusai ir minusai. Be to, aptariami įvairūs mokymo metodai, tokie kaip elgesio įgūdžių mokymas, vaizdo modeliavimas, instrukcijomis grįsti metodai. Galima daryti išvadą, kad tyrimai rodo, jog metodai, turintys ir elgesio komponentą, yra efektyviausi. Autizmo įsi-sąmoninimo ir švietimo tiesiog nepakanka – siekiant padėti tėvams ugdyti vaikus, reikia mokyti tėvus įrodymais grįstais metodais.

Įteikta 2017-05-08